Every year in Uganda, nearly 91,000 babies are born to HIV-infected mothers and risk starting their lives with a deadly disease. Mother-to-child transmission of HIV accounts for 21 percent of the total HIV transmission cases in the country.
Despite these figures, it’s important to remember that mother-to-child transmission is entirely preventable. In fact, simply through monitoring and tracking the delivery of a proven set of health interventions, the elimination of mother-to-child transmission of HIV is very possible.
Digital health tools are helping to make eMTCT not just possible but also likely. Last week’s World AIDS Day marked a critical moment to explore how digital health can build essential connections among pregnant women, health facilities, health providers, and stewards of national health systems to ensure no newborns fall through the cracks.
The eMTCT cascade of care
In the world of AIDS treatment, we often talk about the “cascade of care” that is critical for ensuring pregnant women do not pass on HIV to their children. The eMTCT cascade of care begins when a pregnant woman attends the first antenatal care visit during her first trimester and is tested for HIV. If a pregnant woman is identified as HIV-positive, she will start antiretroviral treatment and continue through a process that includes safe delivery and newborn prophylaxis administration, followed by postpartum interventions, including safe infant feeding and early infant HIV testing and diagnosis.
The eMTCT cascade of care is a demanding set of health interventions that necessitates integration and coordination amongst HIV, maternal health, and child health units at the service delivery level. It is often gaps in this service delivery that allow mother-to-child transmission to persist. Pregnant women often have their first antenatal visits too late, facilities are fragmented between antenatal care and HIV testing units, rates of delivery are low at a health facility with a skilled provider to administer newborn prophylaxis, and turnaround times for early infant HIV testing are slow.
Using real data for eMTCT in Uganda
In recent years, Uganda has made important progress in addressing these service delivery gaps and reducing MTCT. Uganda’s Ministry of Health, for example, launched an aggressive effort to scale up the World Health Organization’s eMTCT “Option B+” strategy in 2012. The strategy recommends providing lifelong antiretroviral treatment to all pregnant and breastfeeding women living with HIV regardless of their CD4 count, which measures how well their immune systems are working against HIV.
To support the scale-up of Option B+, the MoH launched an SMS-based monitoring platform to track the progress of eMTCT efforts across the health system and use real numbers, rather than estimates, to represent real people. Every week, public health facilities in the country send data via SMS on key performance metrics, including the number of women tested for HIV on the first antenatal visit, the number of pregnant women identified as HIV-positive initiated on ART, and the number of early infant HIV tests performed. Every Tuesday, the MoH convenes implementing partners in the country to review the data and discuss strategies to respond to performance gaps.
This concrete data allows health players to track concrete milestones and take concrete steps to address gaps. In the week of Nov. 15, for example, the data captured found that 98 percent of women who came into a public health facility for her first antenatal care visit was tested for HIV, and 87 percent of pregnant women identified as HIV-positive, and not on ART, were initiated on ART. These data show the significant strides Uganda has made in leveraging digital health tools to strengthen the early stages of the eMTCT cascade of care.
However, the data have also highlighted one area in which Uganda is faltering: the retention of women and children in the post-pregnancy cascade of care. Currently, only 44 percent of infants born to HIV-positive women receive a virological test for HIV within the first two months of birth.
Taking HIV data to the next level: Integrated national digital health systems
The challenge with tracking women and children across the entire eMTCT cascade of care is the absence of integrated health information systems and national unique patient identifiers to link mothers and newborns to the health system, and to each other.
According to a recent paper published by the Pan-African Medical Journal, Uganda’s eHealth environment is in the “developing and building up” stage as defined by the WHO/ITU National eHealth Strategy toolkit. As a result, the country is focused on strengthening and linking core systems, including electronic medical records and unique patient identifiers, to establish a “unified health system.” Establishing national registries, including provider, facility and unique patient identifiers has become a key priority for development organizations in Uganda.
To truly realize the vision of an integrated national digital health system, several players need to be involved. A quick look at activity in Uganda is promising, but also shows the fragmentation that exists among various efforts. Take these five examples:
1. Uganda’s Ministry of Health.
The MoH, in collaboration with UNICEF, Praekelt Foundation and JEMBI Health Systems, is scaling a mobile messaging program called Family Connect to 19 districts in the country, testing Android-based tools to support Village Health Workers, and establishing an enterprise architecture for a national integrated digital health system.
2. Management Sciences for Health.
Management Sciences for Health has completed a comprehensive mapping of health facilities in the country, and Intrahealth International is leading the development of a national health provider registry.
3. Clinton Health Access Initiative.
The Clinton Health Access Initiative is in the early stages of testing a unique patient identifier to link mother and children across the eMTCT cascade of care, and to laboratories in order to prevent loss-to-follow-up due to delays in infant HIV testing results.
4. University collaborations.
The Makerere University and John Hopkins University Research Collaboration are testing the impact of sending pregnant women SMS appointment reminders on antenatal care attendance.
5. Demographic Health Information System 2.
The national health information management system, Demographic Health Information System 2, serves as the official repository for national health reporting data and data collected from digital health tools. mTrac, the mobile companion of DHIS2, is used by all government facilities in the country to send in weekly disease surveillance and stock management information.
While the level of activity is encouraging, these systems and digital health tools all exist in isolation. This limits the potential to track women and children across the eMTCT cascade of care and truly improve their health outcomes.
Standards, guidelines and national registries will be the connective tissue to help Uganda and other countries establish a functional integrated eMTCT platform and national digital health system.
Next steps toward an AIDS-free generation
Uganda has made phenomenal progress in establishing health information systems to address vulnerabilities in its health system. To realize the vision of an integrated national digital health system that supports tracking women and children across the eMTCT cascade of care, three next steps are critical:
First, Uganda needs to formally review and operationalize its national e-health strategy. This will inform the development of standards and guidelines critical to ensuring interoperability between health information systems and with DHIS2.
Secondly, a comprehensive review of eMTCT digital health tools needs to be conducted to architect an integrated platform that cuts across the eMTCT cascade of care.
Finally, priority and investment is needed to establish unique patient identifiers to facilitate tracking of pregnant women and children through the health system and enable data to follow them between health information systems and digital health platforms.
For the first time in history — by bringing together political will, resources and the right digital health tools — the elimination of mother-to-child transmission of HIV and guaranteed HIV-free survival for newborns is within our reach. As we reflect on this year’s World AIDS Day, let’s push forward on the next few steps to make the AIDS-free generation a reality.